Your Experiences with Cancer

This survey is about the lasting effects of cancer and cancer treatments on the lives of those who have been
diagnosed with cancer.

The survey will ask about the effects of cancer, its treatment, or the lasting effects of that treatment on your
employment, finances, health insurance coverage, and life in general. The goal of this survey is to help improve
experiences of people diagnosed with cancer in the future. Please take the time to answer these questions about
your experiences with cancer.

Your participation is voluntary and all of your answers will be kept confidential to the extent permitted by law.

If you have any questions about this survey, please call Alex Scott at 1-800-945-MEPS (6377).

The person named in the box below should complete this survey:

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Complete your survey now, by continuing to the next page.

Your responses will be kept confidential to the extent permitted by law, including AHRQís confidentiality
statute, 42 USC 299c-3(c). That law requires that information collected for research conducted or supported by
AHRQ that identifies individuals or establishments be used only for the purpose for which it was
supplied unless you consent to the use of the information for another purpose. Public reporting burden for this
collection of information is estimated to average 20 minutes per response, the estimated time required to complete
the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of
information unless it displays a currently valid OMB control number. Send comments regarding this
burden estimate or any other aspect of this collection of information, including suggestions for reducing this
burden, to AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (0935-0118),
AHRQ, 540 Gaither Road, Room #5036, Rockville, MD 20850

The Agency for Healthcare Research and Quality and The Centers for Disease Control and
Prevention of the
U.S. Department of Health and Human Services.

Section 1. Cancer History

This first section asks about your cancer history.

Answer each question by marking your response or filling in a number when necessary.

1.

Have you ever been told by a doctor or other health professional that
you had cancer or a malignancy of any kind?

Yes.

No. Please stop. Thank you for your time. This survey is complete.

2.

Was your only cancer diagnosis or treatment before the age of 18?

Yes. Please stop. Thank you for your time. This survey is complete.

No.

3.

Are you currently being treated for cancer — that is are you
planning or recovering from cancer surgery, or receiving chemotherapy, radiation therapy, or hormonal
therapy for your cancer?

Yes. Go to Question 8.

No.

4.

To the best of your knowledge, are you now free of cancer?

Yes.

No.

I don't know.

5.

About how long ago did you receive your last cancer treatment?

Less than 1 year ago.

1 year ago to less than 3 years ago.

3 years ago to less than 5 years ago.

5 years ago to less than 10 years ago.

10 years ago to less than 20 years ago.

More than 20 years ago.

I have not been treated for cancer.

6.

Did a doctor or other health professional ever tell you that your cancer had come back?

Yes.

No. Go to Section 2, page 2.

7.

What was the most recent year a doctor or health professional told you that your cancer had come back?

(enter year)

Go to Section 2, page 2.

8.

Is this the first time you have been treated for any type of cancer?

Yes.

No.

Continue with Section 2, page 2.

Section 2. Changes to Your Work Schedule

9.

At any time from when you were first diagnosed with cancer until now, were you working for pay at a job or business?

Yes.

No. Go to Question 47, page 6.

These next questions ask about different ways cancer, its treatment, or the lasting effects of that treatment may have affected your work — that is, your hours, duties, or employment status.

As you answer these questions, please think about the entire time from when you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

10.

At any time since your first cancer diagnosis, did you take extended paid time off from work, unpaid time off, or make a change in your hours, duties or employment status?

Yes. Go to Question 13.

No.

11.

At any time since your first cancer diagnosis, did you ask for extended paid time off from work, unpaid time off, or a change in your hours, duties or employment status?

Yes.

No. Go to Question 36, page 4.

12.

Did you ask for these work changesÖ

Because of your cancer, its treatment or its lasting effects? Go to Question 36, page 4.

Some other reason? Go to Question 36, page 4.

13.

Did you make these work changesÖ

Because of your cancer, its treatment or its lasting effects?

Some other reason? Go to Question 36, page 4.

14.

Did you ever take extended paid time off from work (vacation, sick time and/or disability leave)? By extended time off, we mean more than an occasional day off here and there.

Yes.

No. Go to Question 18, page 3.

15.

When did you take extended paid time off from work?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

16.

What do you estimate was the total amount of extended paid time off from work that you took?

Less than 2 months.

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

17.

Is your extended paid time off from work ongoing?

Yes.

No.

18.

Did you ever take unpaid time off from work?

Yes.

No. Go to Question 22.

19.

When did you take unpaid time off from work?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

20.

What do you estimate was the total amount of unpaid time off from work that you took?

Less than 2 months.

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

21.

Is your unpaid time off ongoing?

Yes.

No.

22.

Did you ever change from working part-time to working full-time?

Yes.

No. Go to Question 26.

23.

When did you change from working part-time to working full-time?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

24.

What do you estimate was the total amount of time you worked full-time?

Less than 2 months.

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

25.

Is this change ongoing?

Yes.

No.

26.

Did you ever change from working full-time to working part-time?

Yes.

No. Go to Question 30, page 4.

27.

When did you change from working full-time to working part-time?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

28.

What do you estimate was the total amount of time you worked part-time?

Less than 2 months.

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

29.

Is this change ongoing?

Yes.

No.

30.

Did you ever change from a set work schedule, where you start and end at the same time every day, to a flexible work schedule, where your start and end times vary from day-to-day?

Yes.

No. Go to Question 32.

31.

When did you change to a flexible work schedule?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

32.

Did you ever change to a less demanding job?

Yes.

No. Go to Question 36.

33.

When did you change to a less demanding job?

Mark all that apply.

At the time of diagnosis.

During treatment.

Less than one year after treatment was finished.

One year or more after treatment was finished.

34.

How long did you stay in the less demanding job?

Less than 2 months.

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

35.

Is this change ongoing?

Yes.

No.

36.

Did you make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?

Yes. Please describe.

No. Go to Question 37, page 5.

37.

Because of your cancer, its treatment, or the lasting effects of that treatment, did you ever decide not to pursue an advancement or promotion?

Yes.

No.

38.

Because of your cancer, its treatment, or the lasting effects of that treatment, did you retire earlier than you had planned?

Yes. Go to Section 3.

No.

39.

Because of your cancer, its treatment, or the lasting effects of that treatment, did you delay retirement beyond when you had planned?

Yes.

No.

Section 3. Other Aspects of Work

Please continue to think about all your work experiences from the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

40.

Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability
to perform any physical tasks required by your job?

Yes.

No.

I was never required to perform physical tasks as part of my job.

41.

Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability
to perform any mental tasks required by your job?

Yes.

No.

42.

Did you ever feel that, because of your cancer, its treatment, or the lasting effects of that treatment, you were
less productive at work?

Yes.

No.

43.

Did you ever worry that, because of the effects of cancer on your health, you might be forced to retire or quit work before you are ready?

Yes.

No.

44.

Did you ever stay at a job in part because you were concerned about losing your health insurance?

Yes.

No. Go to Question 46.

45.

Were you concerned about losing your health insurance because of your cancer?

Yes.

No.

46.

Thinking about your work life or career, what effect has your experience with cancer, its treatment, or the lasting effects of that treatment had on it?

Mostly positive effect.

Mostly negative effect.

Equally positive and negative effect.

Neither positive nor negative effect.

47.

Did your spouse or significant other ever stay at a job in part because he/ she was concerned about losing health insurance for the family?

Yes.

No.

Does not apply.

Section 4. Caregivers

This section is about caregivers, meaning friends or family members who may have provided help with getting to the doctor, going to appointments with you, making decisions about treatment, or providing other types of care and support during or after cancer treatment.

Please continue to think about the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

48.

Since the time you were first diagnosed with cancer, has any friend or family member provided care to you during or after your cancer treatment?

Yes.

No. Go to Section 5, page 8.

49.

Since the time you were first diagnosed with cancer, has any friend or family member provided care to you during or after your cancer treatment?

Yes. Go to Question 50, page 7.

No. Go to Question 63, page 8.

None of my caregivers were employed while caring for me. Go to Section 5, page 8.

I don’t know. Go to Question 63, page 8.

50.

Did any of your caregivers ever take extended paid time off from work, unpaid time off, or make a change in their hours, duties, or employment status for at least 2 months?

Yes.

No. Go to Question 63, page 8.

51.

Did any of your caregivers take extended paid time off from work (vacation and/or sick time)?

Yes.

No. Go to Question 54.

52.

How long do you estimate this caregiver took extended paid time off from work?

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

53.

Is this caregiverís extended paid time off from work ongoing?

Yes.

No.

54.

Did any of your caregivers take unpaid time off from work?

Yes.

No. Go to Question 57.

55.

How long do you estimate this care- giver took unpaid time off from work?

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

56.

Is this caregiverís unpaid time off ongoing?

Yes.

No.

57.

Did any of your caregivers change from working part-time to working full-time?

Yes.

No. Go to Question 60.

58.

How long do you estimate this caregiver worked full-time?

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

59.

Is this change ongoing?

Yes.

No.

60.

Did any of your caregivers change from working full-time to working part-time?

Yes.

No. Go to Question 63, page 8.

61.

How long do you estimate this caregiver worked part-time?

2 months to less than 6 months.

6 months to less than 1 year.

1 year to 3 years.

More than 3 years.

62.

Is this change ongoing?

Yes.

No.

63.

Did any of your caregivers make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?

Yes. Please describe.

No. Go to Question 64.

I don’t know. Go to Question 64.

64.

Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers change to a less demanding job?

Yes.

No.

I don’t know.

65.

Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers retire early?

Yes.

No.

I don’t know.

66.

Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers delay retirement?

Yes.

No.

I don’t know.

Section 5. Experiences with Health Insurance

The next few questions are about health insurance coverage from the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

67.

At any time from when you were first diagnosed with cancer to now, were you covered by health insurance that paid for all or part of your medical care, tests or cancer treatment?

Yes.

No. Go to Question 70.

I don’t know. Go to Question 70.

68.

Was there ever a time when health insurance refused to cover a visit for your cancer to the doctor or facility of your choice?

Yes.

No.

Does not apply.

69.

Was there ever a time when health insurance refused to cover a second opinion about your cancer?

Yes.

No.

I never asked for a second opinion.

70.

Were you ever denied health insurance coverage because of your cancer?

Yes.

No.

I never applied for health insurance.

Section 6. The Effects of Cancer and Its Treatment on Finances

The next questions ask about different kinds of financial burden you or your family may have experienced because of your cancer, its treatment, or the lasting effects of that treatment.

Please continue to think about all the time from when you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

71.

Have you or has anyone in your family had to borrow money or go into debt because of your cancer, its treatment, or the lasting effects of that treatment?

Yes.

No. Go to Question 74.

72.

How much did you or your family borrow, or how much debt did you incur because of your cancer, its treatment, or the lasting effects of that treatment?

Less than $10,000

$10,000 to $24,999

$25,000 to $49,999

$50,000 to $74,999

$75,000 to $99,999

$100,000 or more

73.

Did you or your family ever file for bankruptcy because of your cancer, its treatment, or the lasting effects of that treatment?

Yes.

No.

74.

Have you or your family had to make any other kinds of financial sacrifices because of your cancer, its treatment, or the lasting effects of that treatment?

Yes. Please describe.

No. Go to Question 75.

75.

Have you ever worried about having to pay large medical bills related to your cancer?

Yes.

No.

76.

Please think about medical care visits for cancer, its treatment, or the lasting effects of that treatment. Have you ever been unable to cover your share of the cost of those visits?

Yes.

No.

Continue with Section 7, page 10.

Section 7. Medical Care for Cancer

These next questions ask about certain experiences you may have had when receiving medical care for cancer from the time you were first diagnosed to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

77.

At any time since you were first diagnosed with cancer, did any doctor or other healthcare provider, including your current healthcare provider, ever discuss with you...

a.

The need for regular follow-up care and monitoring even after completing your treatment?

Discussed it with me in detail.

Briefly discussed it with me.

Did not discuss it at all.

I donít remember.

b.

Late or long-term side effects of cancer treatment you may experience over time?

Discussed it with me in detail.

Briefly discussed it with me.

Did not discuss it at all.

I donít remember.

c.

Your emotional or social needs related to your cancer, its treatment, or the lasting effects of that treatment?

Discussed it with me in detail.

Briefly discussed it with me.

Did not discuss it at all.

I donít remember.

d.

Lifestyle or health recommendations such as diet, exercise, quitting smoking?

Discussed it with me in detail.

Briefly discussed it with me.

Did not discuss it at all.

I donít remember.

78.

At any time since you were first diagnosed with cancer, did you get all of the medical care, tests, or treatments that you or your doctor believed were necessary?

Yes. Go to Section 8, page 11.

No.

79.

Which of these are reasons you did not get all of the medical care, tests, or treatments you or a doctor believed you needed?

Mark yes or no for each item below.

Yes, a reason

No, not a reason

a.

Couldn’t afford care

b.

Insurance company wouldn’t approve or pay for care

c.

Doctor did not accept your insurance

d.

Had problems getting to doctor’s office

e.

Couldn’t get time off from work

f.

Didn’t know where to go to get care

g.

Couldn’t get child care/adult care

h.

Didn’t have time, care/test/treatment took too long

i.

Other reason

If you answered “Yes” to only one reason in Question 79, GO TO Section 8 on page 11. Otherwise continue with Question 80, on page 11.

80.

When did you change to a less demanding job?

Mark one only.

Couldn’t afford care

Insurance company wouldn’t approve or pay for care

Doctor did not accept your insurance

Had problems getting to doctor’s office

Couldn’t get time off from work

Didn’t know where to go to get care

Couldn’t get child care/adult care

Didn’t have time, care/test/treatment took too long

Some other reason. Please describe.

Section 8. The Effects of Cancer and Its Treatment on Life in General

The last few questions in the survey ask about how your cancer, its treatment and the lasting effects of that treatment may have influenced certain parts of your life.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

81.

Did your cancer, its treatment, or the lasting effects of that treatment ever limit the kind or amount of activities you do outside of work, such as shopping, child care, exercising, studying, work around the house, and so on?

Yes.

No. Go to Question 84.

82.

How long were you or have you been limited in the kind or amount of usual daily activities?

Less than 6 months.

6 months to less than 1 year.

1 year to less than 3 years.

3 years to less than 5 years.

5 years to less than 10 years.

More than 10 years.

83.

Is this limitation ongoing?

Yes.

No.

84.

Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability
to perform any mental tasks as part of your usual daily activities?

Yes.

No.

85.

Have you ever asked for help getting to a doctor or other healthcare provider because of your cancer, its treatment, or the lasting effects of that treatment?

Yes.

No. Go to Question 87.

86.

Did you ever receive help getting to a doctor or other healthcare provider?

Yes.

No.

87.

Have you ever asked for help understanding health insurance or medical bills related to your cancer, its treatment, or the lasting effects of that treatment?

Yes.

No. Go to Question 89.

88.

Did you ever receive help understanding health insurance or medical bills?

Yes.

No.

89.

How often do you worry that your cancer may come back or get worse?

Never Go to Question 91.

Rarely

Sometimes

Often

All the time

90.

How often do you worry that if your cancer came back or got worse it might keep you from fulfilling responsibilities at home or at work?

Never

Rarely

Sometimes

Often

All the time

91.

In your own opinion, what do you think are the chances that your cancer will come back or get worse within the next 10 years?

Very low

Fairly low

Moderate

Fairly high

Very high

I don’t know

92.

Have any of the following been positive things about your experiences with your cancer, its treatment, or the lasting effects of that treatment?

Mark yes or no for each item below.

Yes

No

a.

It has made me a stronger person

b.

I can cope better with life’s challenges

c.

It became a reason to make positive changes in my life

d.

It has made me have healthier habits

93.

Please use the space below to tell us anything else about your experiences with cancer

______________________________________________________________

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